Merry Christmas - 12/25/2015

And the angel said unto them, Fear not: for, behold,

I bring you good tidings of great joy, which shall be to all people

Thanks for the amazing year of hope, peace and kindness.  From the meals to the visits to being the recipient of my predizone induced insanity (sorry Mom).  You've walked beside me and carried me through this last year.  May God bless you and your families and may we all be slightly more aware and understanding people for all we've been through.

Love - The Staudts

Quick Medical Update:  In the clinic yesterday and by every measure I am doing very well.  Leukemia continues to be non-existent in my system, my marrow is finally producing healthy cells (a key step in my being a self sustaining leukemia free person without the need for transfusions every few days).  No complications such as heart/kidney/liver issues and for the first time since this summer I am not neutropenic (i.e. my white blood cells are many and strong and can fight their own battles should an infection come my way).  

On Christmas Eve, spent the morning in the clinic with cousin Mark and his wife Karen which was so lovely and relaxing.  Then spent the day with Jim, Emma and Joseph.  We went to Christmas Eve mass and were among the last to leave as we finished conversations with friends.  Jim and Joseph headed to our wonderful neighbors Richard and Christine for their annual party then we all settled in for the night.  Today promises to be a relaxing Christmas pajama day with presents, food, family and never ending gratitude.

Merry Christmas

Love 

Maureen, Jim, Joseph and Emma (oh and Guinness

Tuesday December 22

Some solid holiday healing happening here in north Andover and Boston.

There are 3 sort of buckets to look at:

• Am I leukemia free?  Currently yes and that has been confirmed in my last bone marrow biopsy about  month ago.  We attribute this to clean living and a chemo pill I was taking pretty regularly that also has the important side benefit of boosting my healthy immune system.
• How do I stay leukemia free?  For this  I need a strong immune system and marrow that keeps producing  healthy cells. My donor cell infusion was  really helpful here as that resulted in a boost of my immune system.  In addition my marrow is now producing red, white blood cells and platelets requiring less frequent infusion.   My marrow has not been consistently productive since this past summer so this is huge.
• Minimizing or maximizing those crazy thing  that crop up. As I have complications like low blood pressure or fever I put myself in the capable hands of my medical team. I have  gotten red blood and  even gone back into the hospital always getting back to my baseline 

Current status. Still in the clinic every other day through next week at least. All numbers looking great. Blood counts are up (showing recovering marrow)  Liver numbers back to normal range. Most recent cardio echocardiogram shows me having   healthy normal heart infraction. Again first time since  this summer. Rash hanging  on but is indicative of strengthening immune system.

Emma has a Christmas pageant today that I will likely be able to make. Kids have been making Christmas cookies and helping with the last of the holiday prep. Jim is doing great and keeps it all together (especially with the unexpected week in the hospital ending last Friday)  All great here   

Thanks for checking in and Merriest of merries

Love Maureen

weekend update Friday December 18

Heading home tonight. Woo hoo. My good friend Judy will be here shortly to spirit me home. I am going home with a healthy blood pressure and feeling great overall. Keeping an eye on my rash which persists but is not causing any real trouble.

My liver enzyme numbers had been elevated but  those are coming down as well. Most likely graft v  host.

Finally my blood and platelets counts are looking good.

So great day today. What an awesome Friday. Oh and Joseph is home so we are all back together.

Thanks for checking in and a special thanks to Beth and Judy for your help this week.

Love Maureen

Tuesday December 15

Looks like I will be in the hospital a bit longer than we originally thought.  My liver numbers are elevated - could be drug related, could be tied to graft vs. host - either way they need to see the trajectory before I go home.  Since the liver numbers are drawn each morning I am here a few more mornings to see if the direction they go.  My treatment plan will be adjusted accordingly (possibly daily) and probably involve adjusting my steroid medications.

This is a hassle in that it has me in the hospital longer than otherwise but is entirely manageable to get stabilized.  Just need some time.

So what the heck?? - if you missed Monday's update...I am back in the hospital as of Saturday 12/11 admitted with low blood pressure, a fever and rash.  The blood pressure improved with fluids and steroids.  The rash brought under control with steroids and the passage of time.  The fever was treated with antibiotics.  Today (12/15) I am feeling really good - no fever, blood pressure normal and rash rapidly disappearing.

So where did this  all come from...When things like this happen, the usual suspects always seem to be an infection. graft vs host or drug reaction.  So far all my cultures have come back clean (no growth of an infection).  This may be a drug reaction to an antiviral medicine.  I've been on that for awhile but my body may be reacting differently post DLI.  Finally (and this is the leading likely diagnosis) this is all likely tied to graft vs. host an expected side effect of the Donor Lymphocyte
infusion (DLI) I had Tuesday 12/8.  The infusion is the one we've been waiting for to give my immune system a boost helping keep the leukemia at bay.  The immune system in overdrive can cause GVH which is my immune system going after any organ it sees as foreign (skin, liver) or compromised cell (leukemia).  So it is a good thing that has to be managed which is happening now in the hospital.

When will I go  home?  That is unclear until my liver numbers stabilize...not before Friday.  Will keep you posted.

Thanks for checking in!!

Love Moe

Monday December 14, 2015

Wow - sorry for the blog writing dry spell but with good reason.

Still walking on clouds with the news of the biopsy showing no leukemia.  Thanks for all your beautiful prayers and support - and a heartfelt thanks to God who has walked beside me and continues to carry me through this remarkable journey.  We still have a ways to go to keep me healthy and firmly in remission and so many, many things on our side to get me there.  Okay take a look at what a difference a couple weeks can make.

First the social side...we have had some lovely times with friends and family (by this point friends are family)...anyway, a lovely dinner with friends the weekend before last.  One of Emma's best buds Jane came to join us with Jim/my best buds Kirsten and Glen.  They brought their dog Cash who enjoyed Guinness's company for a good portion of the evening and was disappointed he could not find Guinness' off switch.  We left them outside for as much of the evening as possible.  My cousin Margein joined us earlier in the afternoon and we went to Michaels Crafts (what a trip of love) where Margein and Emma found lots of stuff to make homemade gift tags.  We brought home our haul and Emma and Jane made some really clever tags.  Very fun and festive evening with everyone enjoying the Staudt meatballs from their secret family recipe!!

Christmas decorations are 99% of the way up and will not get to 100% this year.

Now on the AML side...This past Tuesday I received the donor cells and my cousin (by marriage to my cousin Joe) Jane was with me during the infusion.  All went well with no immediate complications or side effects.  Awesome day and lovely of Jane to keep me company.

Thursday had me back at the clinic for platelets and a scheduled CAT scan for my lungs.  In late Oct/early Nov I was admitted to Beth Israel with a fever that always is alarming when ones white count is low to non-existant.  Anyway I had a CAT scan then which showed some inconclusive but suspicious shawdows on my lung that could have been pneumonia.  I was given antibiotics and sent home after several fever free days.  This recent CAT scan was to see if the pneumonia was still there and it was/is not hooray!!

BUT (why is there always a but) I was exhausted all day Friday (like struggling to get down the stairs tired) and began to notice my chest and torso were bright red.  By Saturday I had a full blown rash (again!!) mostly on my arms,  torso and neck which spread throughout the day.  I already had a Saturday morning appointment to which my friend Karen drove me and wheeled me to (I don't want to get used to the wheel chair but it is sooo nice when you need it).  Jim and Emma were at her High School placement exams.  Karen and I have known each other and been good friends for years and she is also  Mom to Joe's sponsor from last year's Mr North Andover (Megan Collins - Joe's ringer).  It was so great to spend time with her.  We also met up with  my Aunt Debbie and cousin Kathleen. I rarely get to see Kathleen as she lives in DC so it was so nice of her to spend part of her Mom visiting time with me in the clinic.  Also I ended up being admitted to the hospital and that is always scary news to get when you are alone.

While at the clinic appointment I had my vitals taken (as usual) which showed an extremely low blood pressure and an extremely high heart rate.  My poor little heart was racing like the dickens to compensate for the blood pressure.  Anyway my BP was so low they needed to admit me and get it under control fast.  With the help of fluids and steroids my blood pressure/heart rate improved and I was able to go to my home away from home 7 Feldberg at Beth Israel instead of the ICU.  I remain at Feldberg today (Monday) and the earliest I would be discharged is the 16th (some irony here as this is the day I was admitted in 2014).

They are not sure the underlying causes for the fever (oh I had a fever too) the rash and the low BP.  A strong guess right now is this is tied to the new lymphocytes from the donor and the contrast liquid I took for the CAT scan.  But we may never know  - I am just thrilled and grateful they are both under control.

So will keep you posted on when I get out of the hospital.  Again looks like it will be a pretty quick stay with the problem(s) I presented getting addressed with very quick, compassionate and effective treatment.

Thanks for checking in on this zigging and zagging journey which always happens to keep going in the right direction!!

Love Maureen

Weekend update 12/4

Bone marrow biopsy results are in. I am leukemia free!!  Next ste donor cell infusion scheduled for Tuesday. More later but wanted to share this blessed news.

Monday November 30

Hope you all had a wonderful thanksgiving and weekend. We celebrated with a home full of great friends. A little football, a lot of food and plenty of relaxed conversation. Guinness joined in grabbing a Turkey leg off the buffet table. This after I was extolling his virtues as a dog that NEVER grabs food off the table. Luckily we had all eaten and gone back for seconds before Guinness joined the fun. Joseph was home which was great. Our thanksgiving crowd includes the kids close friends and I think they all had fun.

This past week was the point in my post chemo regimen (about 12 days out from the last day) when my blood counts drop fairly dramatically and I am back to visiting the clinic once a day for platelets and red blood as needed. Luckily I had thanksgiving off!!

Today (Monday) I am also getting a bone marrow biopsy in preparation for th  donor cell infusion. The biopsy will tell us how much of the marrow is me vs the donor. It will also let us know if there is any leukemia lurking.

The infusion will introduce more healthy disease fighting white blood cells in an effort to both eradicate any remaining leukemia and boost my immune system. When someone relapses like I did in August, this is standard protocol to get then back to remission. Complications from August until now prevented us from doing the infusion earlier.

If all goes as planned in coordinating with the donor, we are looking to do the infusion within the next two weeks. will keep you posted.

That's it for now. Will post again when I get the results of the biopsy. In the meantime, thanks for checking in.

Love. Maureen

weekend update November 20

What a few days!  This week I have been unusually winded and short of breath. It was to the point where my friend Amy had to wheel me into my appointments Thursday. Thank goodness she was there!  I never use the wheelchair but could not get more than a few feet without  stopping to rest.  Anyway that started a whole new series of tests (including an ekg, walking heart rate and echocardiogram) So here is where we are.

First the EBV...Per the pet scan the Epstein barr virus has not spread to my lymph nodes which is great news.  That would have complicated my next phase of treatment (the donor cell infusion).

The shortness of breath and accelerated heart rate could be explained by inflamed lungs from either an infection or a reaction to one of the drugs. It could also be low red blood (leaving me anemic)  I did get red blood during my 6.5 hour clinic visit on Thursday (again so grateful a friend was with me!) and feel much better today.  I was back in Friday for the echocardiogram and also got platelets

The weekend has been great.

Friday Emma and her great friends Samantha and Caitlyn were in a county wide geography competition called jowdy. For the second year in a row this team won each round and  ultimately won the competition.  Congratulations girls. A hard one victory and we are very proud.

 I was back in the clinic on Saturday and spent the time with one of my closest long time friends from Ohio, Tom. We had so much to catch up on and it was lovely to see him. Jim joined Tom for the Notre dame (Tom is an alum) BC game. What a game!  Yesterday afternoon Emma had several friends over who will be joining us with their families on thanksgiving. Their work was complemented by a visit from even more Thanksgiving angels today delivering tables/chairs/linens and providing amazing set up service for the holiday we are hosting here later this week.  They did a great job getting our house set up for Turkey Day.

 Sooo grateful for our friendships and for feeling stronger.  What a fortunate and blessed life I have.

Add to top it all all off Joseph comes  home Tuesday and we cannot wait!!

Thanks for checking in

Love Maureen

Quick Update Wednesday 11/18

Hi everyone

In a recent blood test I was found to once again have elevated levels of the Epstein Barr Virus.  This happened once before.  The virus is something that apparently lives in all (or most) of us at such a low level as to be undetectable.  A complication of the transplant is elevated levels of this virus.  Apparently the test shows my level is higher than the last time and I am having a PET scan to see if the virus has impacted any of my organs or other parts of my body.

My medical team fully expects to see the virus has not had any undo negative impact.  So I am going with that expectation.

The above was communicated over the phone so I undoubtedly missed some things.  In my mind the summation is - they saw something they did not like in a blood test but it does not appear to be too bad - I will get another test to be sure initial thought of 'this is not too bad' is confirmed.

We are moving toward the donor cell infusion (I am calling this a mini transplant - it is basically a boost of my donor's healthy white blood cells).  If all goes well that will happen within the next 2 to 3 weeks.

Will update again tomorrow.

Thanks for checking in

Love - Maureen

Monday November 16

Good afternoon!  Well I did break out of the hospital on Wednesday of last week (Nov 11).  I had some kind of virus that settled in my lungs but the antibiotics did the trick.  How wonderful  it is to be back home!  Joseph was in this weekend and it was wonderful to see him.  He and Emma spent the day together Saturday and we had a Staudt movie night on Sat evening.  It is kind of nice having him home when all his friends are still at school so we are the only game in town!

I continue to go into the clinic daily for infusion chemo (Decitabine) for a course lasting 10 days.  Since I started in the hospital my day 10 actually comes tomorrow!  I am also back on the pill chemo (Sorafenib).

Next up in my treatment is likely a donor cell infusion - this is the infusion of white blood cells from my original donor.  While the chemo has been very effective keeping my leukemia in check, my greatest chance for full remission is getting a 'boost' of cells from my donor.  This will amplify the immune effect so any future recurrence of leukemia will be battled back by my new enhanced immune system.

We held off with this infusion until my previous rash cleared up thinking that rash was graph vs. host.
It does get confusing but I am confident I am on the right course of treatment.  I am showing no leukemia in my blood stream which is great.  Right now I am a bit tired from the Decitabine.  This too shall pass.

Will keep you all posted on my progress and next steps.

Thanks for checking in.  Love Maureen

Monday November 9th

What a gorgeous fall weekend we had. Joseph has started track practice at Bowdoin and is very glad to be getting back on the turf or asphalt or grass or whatever. The first meet is not until January but that will come soon enough. Jim and Emma watched the patriots game on Sunday with some good friends and had a wonderful afternoon. They came to see me at the hospital Saturday  we had dinner  and watched  a few  college games.

Yes I am back in the hospital for a quick tune up. In my normal clinic visit on Friday, I had a fever of 100·9. I tried every argument I could think of to get them to agree to send me home. They were having none of it.  Periodically over the last 6 weeks or so when my white blood count was insanely low, I would marvel I had not caught a virus landing me back in the hospital.  Anyway that time came Friday and while I am sick to pieces of always finding the silver lining, I must say that if I was going to get a fever I am so glad it was on a clinic day so they could act quickly and get me treated quickly.

Today is Monday and I may go home as soon as tomorrow. I also started my next round of chemo which I can continue as an outpatient.

So never a dull moment.  I promise you this hospital stay is not a setback. It could have been if it was not treated so effectively.  So hopefully I'll be home in the next day or so.  Thanks to all of you for your support and prayers. And Thanks for checking in. Love Maureen

happy Halloween and weekend update Sunday 11/1

Had a great visit with my brother John last week. Picked him up from the airport and we immediately went to a clinic appointment for a skin biopsy.  Not quite the freedom trail for John but it was great for me to have the company.   All is trending in the right direction with me.  My counts are recovering meaning I do not have to go into the clinic quite as frequently for transfusions.  Soon we will have a plan for next steps. I think the medical team would like to see the rash fully gone and my counts a bit stronger before taking the next steps in my treatment. All good stuff. Jim went to bowdoin this past weekend for family weekend. He and Joseph had a nice guys time together dividing their time between campus and the outlets in Freeport Maine. Nicely done boys. Next appt is Tuesday and I will update you shortly thereafter.  Thanks for checking in. Love Maureen

Weekend Update - Friday 10/23

Happy Fall - what a gift this time of year is.  The air is crisp, the changing leaves are beautiful, the Boston in-bound/out-bound traffic is full of happy drivers....well...the air is crisp anyway.

Things have been busy this past week.  My Mom and sister Kate had overlapping visits with my sister leaving today (Friday).  They have both been incredibly helpful.  This past month, Jim, my Mom or Kate were with me during clinic visits which continue to be filled with biopsies (skin and bone marrow), chemo (starting and stopping), symptom analysis, and discussion of future plans.

The bone marrow biopsy done last week shows no leukemia in my system (same findings as the marrow done two weeks prior).  My marrow also contains very few cells which means it is not terribly productive in its output of red cells, white cells and platelets (the marrow cells being the starting point for production of all of these).  Thus I am still in the clinic every one to two days getting replenishments of blood and/or platelets.

A big change in the last two weeks - the cells that are in my marrow are mostly donor cells.  Basically the donor cells from my spring transplant are fighting back for dominance of my marrow which is awesome.  The nasty rash I have is a manifestation of the donor cells being active which is a very good thing.

The rash started after a couple days of chemo which acts as an immune accelerant.  While it is a good thing the donor cells are again hard at work, my medical team is cautious about jump starting them even further with more chemo so they stopped the infusions for now.  The rash is extremely uncomfortable but is still basically a good sign of the efficacy of my donor cells; amplifying the cells further, however, could result in graft vs. host consequences considerably more dangerous than my rash.

Similarly an infusion of donor cells at this time would amplify the donor cells and the timing may not be right.  Basically we want the donor cells to take over at a pace that is safe - too slow and the leukemia can come back - too fast and we could have graft vs host at a dangerous level.

In addition since I am producing a scant amount of white blood cells (which include the disease fighting cells) I remain severely neutropenic or prone to infection.  Keeping myself pretty home bound when not in the clinic as I could get in big trouble if I am exposed to a virus.

It is all a bit confusing and even if I am not explaining it well in the blog, I promise you I trust my medical team and do have a good understanding of what is going on.

So we are again in a wait and see phase - ultimately a donor cell infusion still looks likely but the timing is uncertain.

In the meantime I am focusing on the amazing news of no leukemia and some recent studies showing the effectiveness of my treatment regimen for long term health.  I am a lucky neutropenic, marrow production challenged, rash covered, leukemia free gal here to tell my story.  Amazing.

Have a great weekend

Thanks for checking in

Love Maureen

weekend update Friday 10/16 - Sun 10/18

My Mom and I were joined by my sister Kate this past Saturday. We've spent most of our visiting time in the clinic as I am getting chemo daily and platelets either daily or every other day.  They have been great company and we spent our Saturday afternoon watching college football. Thank goodness no-one left the room during the final seconds of the Michigan state/Michigan game. What a finish. The Ohio state/Penn state game was too late for all of us though mom and Kate lasted until half time.

Finishing up my Sunday clinic visit shortly with the chemo done, platelets finished and miroccrofungin (an antifungal) currently running.  Getting an ekg as well since one of my new medications can cause my heart to tap dance. Some changes going on with my rash spreading, some chills and mouth sores. All tie  to either my compromised immune system or graft vs. Host. Nothing bad (well not Bad bad)  Will just need to power through this part of my treatment and lay low until things improve.  Starting on a stronger antiviral medication and back on an antifungal medication as well.

Everything else is good. My cousin and her husband are in town seeing their niece row the head of the Charles (her Yale alumni team took 2nd and won   silver). They are coming to see us this afternoon which will be great. Jim,Emma and Joseph are all good.

Thanks for checking in.

Love Maureen

  

Wednesday 10/14/15

First of all Happy Birthday to my Mom!!  We celebrated her 80th birthday yesterday with a small party at casa de Staudt - we will take a rain-check on a true bash but it was so nice celebrating with Mom in person here.

Jim, my Mom and I had a status meeting with Dr. Avigan today (he is my oncologist and an amazing person and physician).  When I was admitted last December he led the multi-person team who worked a miracle beginning the exceptionally difficult process of getting me to remission.  I was again reminded of how fortunate I am to be here telling my story and to keep making forward progress.  I was in BAD shape back in December of 2014.  Dr. Avigan saved my life.

So back to the status meeting...our end goal with my treatment is to get me into a durable remission and get my marrow producing healthy blood cells.  Right now there is no sign of leukemia in my system (YEAH!!).  Yet it won't really be a durable and long lasting remission until my marrow is fully engrafted with the healthy donor stem cells which will enable my marrow to produce sufficient quantities of healthy white blood cells, platelets and red blood cells (eliminating the need for constant transfusions of platelets and red blood cells).  Also, until the donor stem cells become the only cells producing blood in my marrow, there is a risk my original stem cells will again produce leukemia cells.  This is what happened when the leukemia recurred in August.

To decide several aspects of my next phase of treatment, we need some more diagnostics starting with another bone marrow biopsy (yes, another one) done today to see what has changed in my marrow over the last two weeks.  Also we need to monitor this lovely rash I have that is tied to graft vs. host disease (GVH like mine is a good thing I'm told).

Dr. Avigan said any scenario begins with another round of outpatient chemo like the one I received in late August.  The chemo will attack any remaining leukemia cells (while no leukemia was present in the bone marrow biopsy two weeks ago, leukemia is dynamic and sadly could have developed since that biopsy) and provide conditioning needed prior to the infusion. The chemo regimen is scheduled to start this Friday 10/16.  It will consist of a 7 day infusion of Azocytidine along with a pill medication taken at home called Neltrexone.  These are both medications that target leukemia cells and act as immune accelerants.

The chemo will likely be followed by an infusion of the donor cells.   The infusion will again introduce healthy cells from my donor.  It will either be an infusion of T cells (mature white blood cells) called a DLI or a 'boost' of stem cells which engraft to my marrow and produce healthy blood cells.

One interesting tidbit Dr. Avigan shared is he was 'shocked' when the marrow showed no sign of leukemia after just one round of chemo.  He said generally in cases like mine the best he sees is a reduction in the leukemia.  He cautioned leukemia is dynamic and sneaky (okay sneaky is my word) so we may see some leukemia in the biopsy taken today.  If we do we have a plan for that but for now positive thoughts!!

Thanks for checking in and more details once I have the results of the latest biopsy.

Love, Maureen

weekend update 10/09-10/12

Happy Columbus Day weekend.  We had a great weekend celebrating both Joseph and grandma Redmond"s birthday. Joe arrived home on Friday and his first entry into north Andover felt very"weird" after being gone over a month. He's had a fun weekend catching up with family and friends.  Today is beautiful and we hope to get in a nice walk to enjoy the summer temperature on this fall day.

My Mom and I are back at the clinic today. I've been going in every 2 days to get red blood and/or platelets. It seems my marrow is not producing at the level my body needs.  This could be due to a very slow recovery from the chemo ( which suppresses marrow production), graft v host of the  marrow or leukemia (spoiler alert it is not leukemia). Incredibly delighted to report we've ruled out leukemia as the bone marrow biopsy shows no signs of leukemia. Amazing and an answer to our prayers.

We are still going towards an infusion of cells from my original donor.  This will help boost the original transplant with the end goal being an entirely new immune system for me. We had hoped for this with the original transplant back in March.   However my original, compromised immune system remained active along side my donor system. Sadly my marrow (part me part donor) again began producing leukemia. Another round of chemo got me back to remission and this boost should help my new improved healthy immune system fully take over.

The donor is available and ready to get my team what they need. However he recently had an immunization for yellow fever and the Beth Israel infectious disease folks are weighing in to determine when it is safe for him to donate his stem cells. The plan is for me to have the infusion before the end of the month.

Over the past couple weeks I developed a rash covering my back,stomach,arms and legs. It is gradually clearing up with graft vs host the most likely reason for the rash. GVH can be a very dangerous complication of a transplant. In a nutshell it is my donor immune system attacking my body. However small bouts of gvh can be really good when controlled by medications.  It shows my new immune system is hard at work. If I do have gvh of the marrow that too should resolve itself with the help of medications.

So all in all going in a good direction again which is great but oddly overwhelming somehow.

Thanks for checking in and will update you later this week.

Love  Maureen

Monday 10 /5

What an awesome weekend. Emma had a busy social weekend. She is really looking forward to seeing big brother toga Joe this coming Columbus Day weekend. Toga Joe earned his nickname based on how he spent his weekend at Bowdoin.

Jim, my Mom and I enjoyed a lovely dinner with our great friends Jack and Judy while watching the buckeys stumble to victory.

Back at the clinic and have a partial read of the bone marrow biopsy. It shows my bone marrow is not filled with leukemia which is awesome as that was one of the things that could explain the low white  count and low platelet count.  It does leave us wondering what is going on. Could be graft v  host. We will have a better sense of that when the full read of the biopsy is in.  I also had a skin biopsy today on a pretty little rash that has been spreading rapidly. This too could be gvh and that would not be a bad thing as it shows my new  immune system is hard at work.  So again living in the land of uncertainty but I am so glad there was no back  news.

Getting an infusion now to help with the development of platelets.  Then maybe more platelets and red blood.

Will probably be going in to the clinic daily for awhile. We will keep you posted.

Thanks for checking in. Love Maureen

weekend update Friday 10/2

Still sorting through the next steps in my treatment plan. My blood counts remain low which can be explained by the chemo or possibly leukemia still lingering in my marrow. Even though my labs have shown no leukemia blasts in the blood the leukemia may still be in the marrow.  Hoping  that is not the case and thank you in advance for applying the power of your kind prayers toward a clean bone  marrow biopsy.  I had the biopsy Wednesday 9/30 and should have the results early next week.  At this point my treatment plan is an`if this then that` situation. Depending on the biopsy results I may do another round of the immune stimulant chemo called azocitidine. This is the 7 day outpatient infusion chemo I had back in August when the leukemia first recurred. I may also go straight to the donor lymphocytes infusion (boost of original donor cells given to me intravenously).  Finally I may get a more aggressive chemo regimen or some other aggressive treatment ( really hoping that is not my path).

In the meantime life has been busy.  In our search for ways to keep busy that don't involve crowded places (still neutropenic) or too much walking (still getting short of breath) my mom and I have begun attacking the closets. We started with the craft closet.  If anyone needs 500+ crayons or multiple bead jewelry sets let me know.

Jim and kids are good. Joseph comes home next weekend and we cannot wait. Emma is busy with school, rowing and preparing for a  jawdy competition. This is a geography competition among area schools and she and  best pals Caitlin and Samantha are reigning champs representing st Mike's again this year.

Thanks for your prayers,cards, meals, rides and all your other kindnesses especially during this uncertain time. Will update you as soon as I know more about my next steps.

Thanks for checking in. Love Maureen

weekend update 9/25

Happy Friday. We are looking forward to some beautiful fall weather this weekend. Emma rows in her first regatta on Saturday (which also happens to be her 14th birthday).  What a perfect day Saturday promises to be. Grandma and Jim will watch her row. I am a bit wiped out after  this week and will catch the next one. Emma also had her 8th grade retreat this week and had an absolute blast.  Joseph continues to enjoy Bowdoin.  The community of Brunswick is very tied into the school and Joe has begun both tutoring and teaching a Tae Kwon Do class to area grade schools.  The TKD class is part of a new after-school initiative for at risk kids.  Joe said his first class consisted of drills along with some basic kicks and punches until the kids begged for him to "do something cool."  He did some flips and kicks and it seems all were well entertained.  Oh, and I think classes are going well too.

On Tuesday I had a barrage of tests to determine why I have been so tired and short of breath lately. They ruled out the nastiest potential culprits (blood clot in my lung, scaring on my lungs from the chemo) and on Thursday found I have  the Epstein bar virus. Apparently this is a virus that quietly lives in most of us at acceptable levels.  I am tested frequently and the most recent test shows me to have an elevated level of EBV - my levels are not alarmingly high but could explain the fatigue. The hope is the virus will run its course quickly.

My elevated liver numbers detected last weekend led to me temporarily stopping Sorafenib (the pill chemo/immune stimulant).  My numbers are back to normal and I am back on Sorafenib.  Next week the doctors will make a determination if/when I start the infusion chemo.

So while it was a week of some uncertainty, nothing that came up has taken me off track in the treatment of my leukemia.  The medical team is very pleased with how well I am fighting the disease as we have seen no leukemia blasts in my blood in a couple of weeks.

I unexpectedly and happily have Friday and Saturday off.  Back on Sunday and will figure out after my labs are drawn what the plan is for next week,  In the meantime I am enjoying some time with my Mom and getting ready for a lovely Fall weekend.

Thanks for checking in

Thursday September 17

Another day, another visit to the clinic!  Today I learned the details of my upcoming treatment plan.  I will have another round of Infusion chemo beginning next week.  This will be the second cycle for this chemo and will last 7 days.  Again it is out patient.  I remain on the pill chemo which I continue to take daily.

Next up after the chemo is a bone marrow biopsy to learn the state of the leukemia in my bone marrow.  Depending on the biopsy results I will either have another round of chemo or the cell infusion from my original bone marrow stem cell donor.  The biopsy is at least a month away.

So I think we are settling in for another four weeks of basically quiet as the chemo does it's work and we wait for the biopsy.

Two bits of encouraging news - my medical team is very happy with the way I've tolerated the chemo.  If I was not doing so well we would not be going in such a good direction.  Also my blood continues to be blast free which means the leukemia is not in my bloodstream (again thanks to the chemo regimen).

Emma has started her second year of rowing and seems to really enjoy it.  All good reports from Joseph as well.

My Mom is in next week which will be so helpful as I go from every 3 days at the clinic to every day at the clinic!  It will be wonderful to see her.

Weekend Update Sunday 9/13

What a chatty post on Friday!  Well it has a lot of info so check it out for the latest and mostly greatest.

Saturday morning had me back in the clinic for a brief trip to get more platelets and get the final clearance for going to the One Direction concert with Emma!  We've had the tickets for almost a year.  My Doctor cleared me during the Thursday visit and all continued to be well on Saturday.  So we made the trip to Foxborough Stadium, I strapped on my mask and applied purell about 30 times, and we enjoyed the last North American tour of Emma's favorite band.  Emma and I could not have made the trip without the company of my friends Karen and Dina (and their kids).  I was a bit wabbly on the walk too/from the stadium and would not have trusted myself to the long/late drive home.  I thank you from the bottom of my heart and also had a great, great time with you.

Back to the clinic on Tuesday for my now standard every 3 to 4 day visit.  Moving toward getting another bone marrow biopsy and should get it scheduled soon for sometime in the next week or so.

That's it and have a great week.

Thanks for checking in!

Oh, and a Joseph update - Emma sent him a text asking what kind of cookies he wanted in an upcoming care package (she could not decide between two recipes).  He also asked for the hammock Aunt Kate sent for graduation and a Nerf gun.  We feel bad we did not send him to Bowdoin suitably armed.

Friday September 11

Quick Summary:  I am responding well to the chemo (one cycle so far since the recurrence of the leukemia).  One measure of this is the absence of ‘blasts’ in my blood according to recent lab results.  Blasts are immature, abnormal white blood cells produced by the marrow that crowd out production of the good cells.  Next steps in my treatment will be determined by a bone marrow biopsy not yet scheduled but likely in the next week and a half.  In the meantime, I will continue to go into the clinic every 4 days or so getting labs taken and replenishments (red blood, platelets, etc.) as needed.  The chemo and other medications impact the target levels and it is standard to get these replenishments at this point in my treatment.

Moe’s Musings…Woke up today feeling strong and well rested.  WOW – I did not fully appreciate how depleted I was until actually feeling good again.  Yesterday (Thursday) had a clinic appointment and my lab tests showed both my magnesium and platelets were both crazy low.  Those were replenished intravenously making for a long clinic day but well worth it!  My prayers to those who have chronic fatigue or pain with no respite - God be with you.  Also many thanks to those who donate blood and platelets – I am your best customer these days.   Never do I hear ‘oh we don’t have that type blood to give you’ or ‘we’re fresh out of platelets’. 

My friend Ellen is due some credit for the rise in my blood counts as we recently enjoyed her gift of  ‘Moe’s Extra Hearty Blood Cell Strengthening Sauce’ (honest to goodness that’s the name she gave her sauce – a great name albeit with  a limited audience J)

Heading back to the clinic on Saturday – it seems I am going in about every 3 to 4 days.  They take multiple vials of blood (the ghouls) and check all sorts of levels.  Based on the story my levels tell them I’ll get some type of replenishment (red blood cells, etc.) – the levels also dictate my next visit…the lower the levels the more frequently I go in to get topped off.

A little more on blasts…One other thing they are looking for in my labs is ‘blasts’ in the blood.  These are abnormal, immature white blood cells that fill the marrow crowding out production of the good cells.  Presence of blasts in the blood is an indicator that leukemia is active.  The presence of blasts in my blood work about a month ago led to the bone marrow biopsy which confirmed the acute myloid leukemia has returned.

In the past few weeks we have been watching the presence of the blasts and they have been going down.  The last three labs showed no blasts at all.  This is great news per my cautious and conservative medical team.  The story this tells is that my leukemia is responding to the chemo. 

So what next…at some point in the next couple of weeks I will have another bone marrow biopsy to learn the status of my disease (sadly lack of blasts by itself does not equal lack of leukemia in the bone marrow).  This will determine the course of treatment – either another round of chemo or straight to the booster infusion of my original donor’s cells.  The cell infusion will strengthen my new immune system again fighting and eradicating any lingering leukemia or any that should surface in the future. 

My understanding is the original transplant worked in that it kept the disease from exploding when it presented itself again.  This is great news – the lousy news is the leukemia returned at all, an indicator it is pretty aggressive.

In other news…Today was the first Friday mass at St Michaels and it was wonderful to be able to attend.  The eight graders watch over the preschoolers at Mass and all us parents of eighth graders were reminded how amazing it is our kids are no longer those little kids being watched over themselves.  Off to dinner and then Jim and Emma head to the North Andover High School football game (go Knights).  

Monday September 7

Coming off a very nice Labor Day weekend. Emma, Jim and I spent the day in Gloucester yesterday with our great friends the D'Abates. Jim and glen took the boat and the girls drove to a waterfront restaurant where the boys docked and joined up for lunch. Kirsten, Emma and I toured glouster by car identifying several waterfront homes that met our criteria for a second residence.  We made our way to a lighthouse and long concrete pier/brake wall which we walked down passing artists and fishermen/women and other day trippers. Saturday had been extremely low we energy day for me. Days like that are inevitable but still so frustrating. I am weepy, cranky, tired- a real pleasure to be around.

I am in the clinic for a scheduled visit this morning.  My nurse today said low days are inevitable and they get worried if a patient does not bounce back in a day or so. Also my platelets were very low today and typically I do get tired when they are low.  In the clinic now getting the platelets.

I am on two chemo regimens (one infusion which was administered every day for seven days ending Tue 9/1) and a pill chemo I am taking daily.  My routine since my infusion chemo ended has been to come into the clinic every 3-4 days and get my labs drawn.  One side effect of the chemo is low blood counts so I frequently get replenishment of platelets and red blood.  

Still neutropenic meaning I have very low white blood cells including low neutrofils (disease fighting white blood cells). So I am wearing the mask / gloves in indoor crowded places and back to a restricted diet.

When the leukemia came back the plan was to do one to two cycles of the infusion chemo (taken intravenously at the clinic) while continuously talking the pills.  The infusion is 3 weeks apart so, if we do a second round it would start on or about 9/23.

The next step is the DLI (donor lymphocyte infusion) which is a booster of cells from my original donor to improve the efficacy of the original transplant again helping my own immune system fight any remaining leukemia. So the strategy is twofold targeted chemo to kill the leukemia cells (the type of chemo I am taking also acts as an immune accelerator) and an infusion of new donor cells (a mini transplant -my words not the docs) to boost my immune system and continue it's frontal assault on the leukemia

The determination of which will be the next step (round 2 of chemo or straight to DLI) will be determined within the next week or so. It is too early to say the chemo is working but there are no signs it is not (how's that for hedging my bets).  There are signs I am responding to the chemo which is very encouraging.

Anyway thanks for slogging through this. This is what happens when I have a high energy morning and I am in the clinic by myself.

Oh and before I go the Joseph update. He is enjoying Bowdoin and had a visit from his best pal Megan this weekend   Jim Emma and I hope to get there soon. Well all done at the clinic so off to home.

Monday 8/31/15

Back to the clinic today for my infusion chemotherapy.  This runs 7 days back to back and so far no debilitating side effects which is awesome.  I remain home traveling into the clinic daily for the chemo and red blood/platelets as needed (I've needed one infusion of each thus far).  Just today I became neutropenic meaning my infection fighting white blood cells (neutrophils) are below the optimal level making it more difficult for me to fight off infections.  This was expected as the chemo is reducing my blood counts in general.  So I am back to my 'robbing the bank' look (mask and gloves),  a restricted diet and some restrictions on activities.  The counts should recover within a week or two.  In the meantime, the low neutrophils does not impact the way I feel - still have good energy and appetite etc. for which I am so grateful.  And even though a good chunk of my day is at the clinic, it is such a blessing to be home every night.

One frustration is my insurance companies denial of my pill chemotherapy.  After almost a week of appeals, it looks like they will approve the pill which I hope to start within the next couple of days.  Hopefully this will not compromise my treatment.

Emma continues to cram in last minute summer fun and I thank the people getting her from point A to Point B.  She starts school this week with two half days.

Joseph is doing well at Bowdoin and starts classes Thursday.  We sent him a care package the end of last week which included cookies (from Emma), some photos, and his high school AP Calculus notebooks.  He requested the notebooks - the cookies are all me...the notebooks definitely Jim.  Thank heavens they did not fall victim to my manic cleaning out of 'all things last year'

Well that is it for now - thanks so much for checking in and have a wonderful week.

Thursday August 27

Well this relapse has certainly thrown me for a loop.  It is taking a bit to shake off the shock and disappointment and remember  all that is good and hopeful.

Here is the latest and greatest on the kids...Jim and I had a lovely day at Bowdoin with Joseph.  We took care of some logistics, had a nice tour of the campus,  Joe got reacquainted with the track coach and he really likes his roommates.  He is off to a great start. He started off with a trip that is part of the orientation - it involves Kayaking, canoeing, and spending a quite uncomfortable but very fun couple of nights under a tarp sleeping on the ground.  All good but the Staudt house is a bit too quiet.

Emma is having a busy last couple weeks of summer - she is getting in a fair amount of friend time which includes a week at volleyball camp.  With me going to the clinic daily  she has also been going from friend's house to friend's house and having a great time.  Once again we are amazingly blessed with great friends.

I ended up starting chemo this week (grateful  to my medical team for starting after the Joseph drop off).   The port was placed today.  This was followed by the chemo infusion; pretty quick and straightforward...no side effects or bad reactions.  This  particular chemo regimen is not nearly as toxic as my last and most people do quite well.  Truly I feel just as good as I've felt for the last several weeks.  Side effects may come over the course of the next couple weeks but so far so good.  My chest where the port was placed is an ouch fest but this will pass.

One big question on all our minds is my overall prognosis - here is how things were explained to me.  This treatment has worked on others in my situation.  A relapse of leukemia  relatively soon after the transplant is concerning but a realistic outcome with the chemo coupled with the boost of donor cells is to get me back to remission.   I have faith until further notified (thanks Arline for the saying and hope I got it right).  I don't know when we'll have a measurement of whether the treatment is working.  Ultimately it will be the  next bone marrow biopsy that gives us a definitive answer.  I'll  keep you posted on any directionally good news and also when the next biopsy is scheduled - we are probably at least 2 + months out.  In the meantime my posts may consist of updates on my appetite, good books I am reading and how the kids and Jim are doing.  Bear with me!!

Thanks for checking in

Monday Update 8/24

Jim and I were in the clinic today and I have a sketch for my treatment plan..The most likely scenario is I will start chemo Monday.  It will be outpatient (can I get an AMEN) with two types of chemo - one taken intravenously and one as a pill.  The intravenous chemo will run 7 days which means I'll be going to the clinic 7 days in a row for the one hour infusion. After the 7 days of the intravenous chemo, I will be in the clinic once a week for a check up.  Simultaneously I will be taking chemo via a pill for  a total of 21 days (7 of which overlap with the infused chemo). 

The plan is for two cycles of this chemo regimen.  

After the two rounds of chemo the plan is for me to get a booster infusion of the original donors cells.  These donor cells will help boost my immune system (again!) to fight off any stubburn leukemia cells.  They will go back to the original donor and procure those cells closer to the date they will be needed.  

There will be more to tell later in the week - for now doing the last minute packing to get Joseph off to school!  We leave for Bowdoin in the AM!!

More later - love Maureen

Weekend Update 8/22

Hard to believe it has been so long since my last post!  The summer has been wonderful.  We've been to the beach, out on the boat, and spent a fair amount of time shopping and preparing for 'back to school and off to college'.  We had several of our Ohio cousins here for a week which was amazingly fun.  They went tubing, toured Boston, spent some time in York at the beach/arcade/Golden Rod candy shop and a day in Westport with my cousin Joe, Aunt Debbie and Joe's kids.  The day and the sea cooperated and we had a beautiful time with the kids body surfing and the adults sitting under umbrellas - now that is a beach day.

Over the summer my visits to the clinic have been pretty regular and uneventful - until last week.  My white counts and platelets were dropping slightly which was not a definative cause for concern.  At the time I had a slight cold which could cause the drop.  However they decided to do a Bone Marrow Biopsy to make sure the leukemia had not come back and sadly we have found that it has.  This is pretty new news and Jim and I will go in Monday to learn the game plan.  Basically it will be some form of boosting my donor stem cells and attacking the leukemia with chemo.  In a way they overlap because boosting my donor cells should give more power within my own body to attack the leukemia.

Here is a little more detail from a non-medical person still in a bit of shock and maybe not fully translating what the doctor said

• The leukemia is in my marrow but not yet in my blood stream.  This could change quickly as AML typically presents and develops rapidly.  
• There is a possibility the leukemia will not 'explode' in terms of growth as my donor immune system has been fighting it's progression.
• From the beginning I've known I have a particularly aggressive form of leukemia and the fact that it has come back so soon after the transplant bears this out,
• The transplant engraphment is a gradual process.  Right now I am 50% donor cells 50% me.  At one point the donor cells were higher and my doctor is thinking the leukemia may be the cause of reducing that percentage of donor cells.  Of the 50% that is me, about 20% are leukemia cells.
• When I went into the hospital in December of last year my marrow was 100% leukemia cells crowding out everything else,  I am at a much better starting point compared to that.

The goal is getting me back to remission which is realistic and the treatment outlined has a history of success with other patients.  I should know more Monday re: treatment plan and maybe disease progression.

In the meantime I still feel good - decent energy and appetite etc. - for which I am very grateful.

The kids know and are doing okay.  Joe is off to school on Tuesday and as of now I'll be able to take him with Jim which is awesome.

That's it for now - keep praying my good and wonderful friends.  Thanks for checking in

Love, Maureen

Happy 4th and Happy 100 days!!

We had a wonderful weekend celebrating 23 years of marriage (Jim and I tied the knot on July 4th 23 years ago), our nations independence AND my 100 days post transplant!   In specific terms, I am able to get back to a more normal diet (I've been fairly restricted and never thought I would miss salads this much) and can get out a bit more without the Haz Mat getup of mask and gloves (though I will still wear in crowded places or the hospital).  I've also begun tapering off the immune suppressant medications.  My feet and ankles get pretty swollen and 'tingly' - going down on the medications may help alleviate these symptoms.  Also there are complications that are most likely to happen in the first 100 days - getting this far without major complications/setbacks is a huge gift.

Next up for me is getting my central line removed.  This line is used for medications, fluids and blood draws.  The only medication I am on via the line at this point is magnesium.  If I can tolerate the magnesium as a pill (apparently this can be hard on the gut for some) then I will likely get the line removed in the near future.  I've been incredibly fortunate the line has not become infected or been problematic in any way.

Hope you all had an incredible and relaxing 4th of July weekend.

Thanks for checking in!

Love,

Maureen

Weekend Update (long overdue!!) Sat/Sun June 27/28

I cannot believe my last post was Memorial Day!  Life has settled into a comfortable routine. Overall I am incredibly blessed to be feeling so good.  My stamina is returning, my color is good, and my weight is up (weird that I would ever say that was a good thing but 4+ months in the hospital, my diet restrictions and the long lingering after affects of the chemo took their toll on my appetite!).  The remaining after effects from the treatment (fatigue, some lingering stomach gymnastics, neuropothy (tingling) in my legs and feet swelling to egg plant size some evenings) are not alarming to my medical team and most likely tied to the medication (still on about 7 meds tied to the leukemia recovery + 3 vitamins) .  The stomach troubles could be mild graft vs. host which can be quite nasty but all my lab work shows my organs are in great shape and my blood work and post-transplant biopsy show no signs of the leukemia's return.  Go new immune system!!

In the past month we had some major milestones - much of them tied to Joseph's senior year.  Joe went to prom with his best friend Megan.  Megan's Mom Karen and I hosted the kids for pictures ar Karen's house - about an hour before the kids were to arrive and just as I was putting a dip in the oven, the power went out.  Thankfully all the girls had finished their makeup and updos - can you imagine??  Graduation followed that Friday and the ceremony was absolutely beautiful (see Joseph and Emma in the photo).  The skies cooperated for the outdoor event and it was a wonderful send off to a great High School career for Joseph.

Emma's school year lingered on until last week but she has managed to cram a lot of living into the week she had between school and her overnight camp.  She had an end of year pool party, a trip to Canobie (local amusement park) plus a couple days in Boston - one day spent on the freedom trail.  We've tried to do the Freedom Trail numerous times but always seem to end up at either Starbucks or Pizzeria Regina (neither of which were visited by the founding fathers).  Her girl scout troop was not so easily distracted and managed to stick with the program.  This morning we dropped Emma off for a two week camp in an Island off Lake Winipisauke in New Hampshire.  She barely remembered to say goodbye which bodes well for how excited she is for camp.

I still visit the clinic frequently for monitoring but have been able to participate in some of the above life moments.   It doesn't take much to tire me out and I am trying to be respectful of my body and minds need for rest as part of the recovery process.  Jim and I were talking last night about how far I've come given the scary starting point with all of this - once again, Thanks to God, all of you, my medical team and amazing family.

The next big milestone is 'day 100' - this is 100 days post transplant - during these first 100 days my risk of complications related to the transplant are at their highest.  In addition most infections happen during the first 100 days when my immune system is at its weakest.  Getting through these 100 days with no serious complications (well there was the fluid in the lungs that sent me to the emergency room but that was treated in short order and my Mom was here to help me through it) and no serious infections is huge.  The official 100th day is July 2nd.

After that I will continue to go into the clinic for monitoring as we need to stay vigilant should longer term complications arise (such as chronic graft vs. host).  There is no magical day when I am considered 'cured' but I sure am doing damn well.  Will keep you posted and will try and be more consistent with the posts!

Thanks for checking in...

With Love
Maureen

Monday May 25. memorial day

Happy Monday.  Life continues to smile on me this past week and weekend. My Mom was here helping with the transition home, getting me to clinic appointments, and helping Jim around the house. We were able to get to several of the kid's events as well (track and volleyball).  Thanks again Mom!

This weekend has been awesome despite my being at the clinic all three mornings. Emma joined me on Saturday and we went to a family party that evening (thanks Diane and John!!). I did not last too long but long enough to see some great friends who did not care one whit they were chatting with a masked and gloved Maureen (these precautions will last until the post-transplant 100 day Mark).

Good friends of ours (Jim and Denise and their two amazing daughters) brought dinner to us on Sunday for a fun little BBQ.  It has been beautiful here and a wonderful weekend.

On the medical side I continue to do well post transplant. At the clinic visits I give multiple vials of blood and my medical team uses these to monitor platelet count, white and red blood cell counts,  tacrolimus/sirolimus levels and the health of my kidney and liver.

I continue to take two immunosuppressive drugs tacrolimus and sirolimus to prevent or lessen Graft vs. Host disease.  At least twice a week I have blood tests to measure the concentration of both in my blood.   For reasons I won’t pretend to understand, the concentration can vary widely from week to week in the early weeks following the transplant.  A concentration that is higher than the established therapeutic range may increase the risk of associated toxicity, including damage to the kidneys, liver and nerves. A concentration that is too low may lead to Graft vs. Host disease (GVHD develops when the donor's immune cells mistakenly attack the patient's normal cells).  Sounds  a little scary but as long as my team is measuring the concentration of these drugs in my blood I am fine – as needed they simply adjust the amount of the drug (think more pills or less pills) to keep me in the therapeutic range.

The multiple clinic visits this weekend were primarily aimed at getting me back into the therapeutic range for the immunosuppressive drug concentration in my blood.  It is quite normal for the concentrations to vary in and out of the therapeutic range and my team always gets me back on track very quickly.  All other indications (lung, kidney, liver, blood counts) are just where they are supposed to be!

Off to read my novel and enjoy a quiet house.  Thank so much for checking in!

Love Maureen

Tuesday May 12

Last Thursday I returned home to North Andover in time for Emma's National Junior Honors Society ceremony, her volleyball game, Joseph's track meet and Mother's Day.  Thanks again to my cousins for their hospitality as I stayed with them in their beautiful Brookline home close to the hospital until  the  Doctor's were ready to set me lose on the North Shore/Merrimack Valley.  My Aunt Debbie escorted me back and forth to the hospital while  I was in Boston.  Now that I am home, my Mom is in town taking me to the clinic every few days to get blood drawn and make sure my levels remain okay - so far so good and the medical team remains very happy with my progress.

Interestingly the transition home has been a little challenging.  There is much I can't do just yet but it will all come in good time.  It is nice having my Mom here and we also had a nice visit with my Jim's sister Gina and her husband George.

Wonderful seeing everyone I've managed to run into so far - getting some good rest and so very grateful to be home.

Thanks for checking in and talk to you all soon

With love
Maureen

Wednesday May 6th

Good afternoon!
Another encouraging day at the clinic.  I am now  at 100% of my donor''s immune system which is as good as it can get at this point.  My Mom arrived today and will be both my great comfort and my chauffeur to/from clinic visits in the upcoming weeks.

On the health front...My creatinine level (kidney function indicator) continues to trend downward -  this has been a challenge to manage given the insult to my kidney from the  chemo combined with some of the drugs I am taking.  Anyway we saw a significant drop from last week which is awesome!

All this plus my my strong blood counts bode very well for my recovery.

I will let you know when life brings me back to North Andover.  Thanks for checking in

With Love
Maureen

Monday May 4th

Greetings to my wonderful friends and family!  I am out of the hospital (again!) after my last trip from the emergency room.  What an incredible team at Beth Israel so quickly diagnosing the reasons for my labored breathing.  I  was discharged to the capable and loving home of my cousin Mark, his wife Karen and my Aunt Debbie.  Mark and Karen live three blocks from the clinic and the walk too/from has been restorative (and gets a little easier every day).  Aunt Debbie (who lives in Sharon, MA and is staying with us at Mark and Karen's) has been my companion for the trips to the clinic and my Mom takes over again on Wednesday May 7.

Joseph returned from Spain and it was wonderful seeing him, Emma and Jim over the weekend.  He had an amazing time (those of you who are privy to his snap chat story can tell me just how amazing - wait, don't tell me :).  My dear friend Denise Rao Monahan spent the evening with me Sunday and made me a beautiful dinner.

Each day the news gets a bit better for my health.  The main measurements for now are my blood counts - virtually all of which are now my donors.  White cells back to normal and platelets climbing. Also. my creatinine was getting a bit out of whack (again!!) but stabilized and is not coming down.  This is great news as it tells me my kidneys are getting stronger.  Also it helps the doctor's know they are on the right track with the levels of some of the drugs I am taking to fight graft vs host disease (see earlier posts).

I was talking to Emma and we were listing the holidays I missed including Christmas, New Years Eve, Easter, Valentines Day - she also mentioned International Dance Day and my cousin Mark mentioned Law Day.  Enough already!!  Actually Emma had great humor and acceptance about this whole journey - I can learn a lot from her :)

For now I am still going into the clinic every day - next step is home to North Andover.  I hesitate to attach a date to my return home - last time I thought I was going home I ended up in an ambulance going to the emergency room followed by re-admittance into Beth Israel.  BUT - the perennial optimist - should things stay stable this week I may be headed home by the end of the week.

Thank you for all  your love, prayers, and support.  I am so very blessed.

Thanks for checking in
Love
Maureen

April 28th

Hello everyone!  Thankfully my breathing is back to normal and I am off the Oxygen as of Sunday,  My kidney creatinine level continues to creep up and I will likely stay in the hospital until it begins a downward trend.  There are a few possibilities for this increase...the medicines I am taking and the fact that I am no longer getting fluids through the IV.  All under review/discussion by my medical team- my nurse Julie calls this phase the cha - cha (two steps forward one step back).

Quick Family update - Emma and Joe were on Spring break last week.  Joe went to Spain (for 2 weeks) and is having a wonderful time.  He's been to Madrid, Seville and spent a week with his host family in Granada.

Emma kept busy with friends - in fact her girl scout troop selected our home for an Earth Day project.  They did some yard clean up and planted flowers and a beautiful azalea bush.  What a kind, hard working group of girls and GS parents - many thanks.

I hope to know tomorrow what my next steps will be.  Thanks for checking in and will keep you posted

Love
Maureen

Weekend Update April 25 and 26

We went from straightforward clinic visits to a whirlwind of activity last Thursday.  Some very encouraging news - I had another bone marrow biopsy and the preliminary results show no lingering leukemia.  Also, the bone marrow I now have looks completely different according to my doctor; thus early indications are the engraphment was a success and the transplant is doing what it is supposed to do.  More testing is in the works to see among other things what % of the marrow is mine vs. the donor.

I did also have a slight derailment on Thursday.  Periodically since getting released from the hospital to the apartment I would become short of breath after walking just a few yards.  Othertimes I could walk from point A to point B no problem.  On Thursday afternoon I was in the clinic getting a previously scheduled echo cardiogram when I had tremendous difficulty breathing.  I was put on oxygen right away and felt better immediately.  They took me to the emergency room (with my Mom riding shotgun in the ambulance) for a chest X Ray and VQ scan as the doctors looked for reasons my oxygen saturation was so low,  The VQ scan tests for a blood clot and fortunately none was found.  The chest X Ray revealed fluid in my lungs which is the most likely culprit for the labored breathing.  I was readmitted to Beth Israel for what I hope is a short stay.

How did this happen?  Best I can tell they overloaded me with fluids while I was in the clinic (I got fluids every morning the two weeks I was in the apartment).  Since Thursday I've taken a couple doses of Lasix and have been happily peeing out the excess fluid.  Hopefully that will do the trick.  My lungs sound better and I can take deeper breaths with no discomfort.  I am waiting for the doctors to round today (Saturday) to learn next next steps including discharge from the hospital (3rd times a charm).

Thanks for checking in and I'll continue to update as internet connections allow.

Love Maureen

weekend update April 18 / 19

Kate and I spent the first week in the apartment and the freedom has been wonderful. I spend each morning in the clinic getting blood drawn and any replenishment (such a  magnesium, potassium or red blood)  Today I am getting red blood transfusion. Yesterday I was unusually tired and the boost in red blood will help.  My brother in law Richard and wife Ann came up from the cape earlier this week and we had a great visit. Somehow the topic came up about the sorry state of the umbrellas in my house (all spokes no protection)  after they left the bell rings and here are rich and Ann with a shiny new umbrella!  Sadly looks like it will come in handy this week.

My Mom is staying with me now. We had a great day taking Joseph shopping at Copley place for some last minute additions to his Spain wardrobe. He left yesterday and will be gone two weeks on an exchange program. Been a bit wiped out ever since so hopefully I'll get a nice boost today.

The docs remain very encouraged with my progress and if it continues I may go home at the end of the week!  Will keep you posted. So glad my mom is here. Jim and Emma arrive shortly. A great day

Thanks for checking in
Love Maureen maureen.staudt@gmail

Wednesday April 15

Settled into the apartment and going to the clinic everyday.  All continues to look good with my numbers.  Rebuilding my stamina with each walk to and from the clinic.  What beautiful days we've been having and that helps. Doing this update on my kindle which has tiny keyboard so keeping it brief. Thanks for checking in. Love, Maureen

Monday April 13

I just realized I was in the hospital over 2 Friday the 13ths.  Take that!

Today is move day to the apartments.  All of my blood work looks good, no fevers or other last minute blips to keep me here.  I was out of bed, in the shower and dressed in street clothes in record time just in case anyone thinks I am sticking around for another day :)

Jim is here and Kate arrives today.  Someone needs to be with me 24/7 in the apartments and Kate is taking first shift.  Hopefully I won't be there too long (maybe 2 weeks) but we'll have to wait and see how I do.

It looks beautiful outside today and I cannot wait to get a breath of fresh air.

My updates may be staggared this week as the apartment does not have wi-fi and I think one day will pretty much be like the last.  I'll keep on this blog as best I can.

Thanks for all your love, support and prayers - and thanks for checking in!

Love
Maureen

Wednesday April 8th

Things continue to look great here with me at Beth Israel.  My blood counts have steadily risen.  The plan right now is for me to be discharged on Monday April 13. Now this is contingent upon no fevers or infections between now and then. So focus those prayer efforts:)

The one bedroom apartments are just a street away   You can see the clinic entrance from the entrance to the Shapiro center clinic. For those of you who have been in the area, they are  on the top floors of the building with the CVS (photo below courtesy of Jim :)

I'll be visiting the clinic everyday and while I am well enough to leave the hospital they keep all their patients close right after the transplant.  My stay there should be 2 weeks. Then home!

My Mom and Kate will keep me company at the apartments with Kate taking first shift next week. Thank goodness for them.

That's it for now. Thanks for checking in

Love Maureen

Monday April 6th

Hope everyone had an amazing weekend and some Spring fun this Easter Sunday.  Jim's family was spread far and wide with some enjoying warmer temperatures for the weekend.  His sister Lorie and BIL Bob were here in Boston and it was great to see Lorie along with her daughter Siobhan and hubby Nick (Bob had a cold and was lovingly banned from coming by Lorie).

The Redmonds all gathered at Grandma Kay's this weekend where the weather was nice enough for an Easter Egg hunt and some Spring baseball.  The Columbus crew had both Friday and Monday off school so they had a nice long weekend.  Here they are alla High School Musical - Nora - Charlie - Erin - Molly -  Patricia and Kathryn.

Every year the North Andover Staudts join several local families to celebrate Easter.  Jim said the food was amazing and there were too many desserts to count.  One year we made the mistake of letting the boys go through the buffet line first - never again.  Emma's friend Samantha and her Mom Amy kept the Staudt carrot souffle tradition alive - a labor of love putting that sucker together. Sounds like it was a lovely day.  My morning was kicked off with a visit by Jim which was terrific.

On the health front...I am enjoying another strong day.  A bit tired as my red blood cells were low - I received a transfusion and feel good.  My stomach has not gotten the  memo that things are supposed to be on the upswing but I am sure this too shall pass.  They are beginning to think about talking about getting me to the apartments (my next stop before home).   Could be within the next couple of weeks.

Thanks for checking in

Love
Maureen

Weekend Update April 4 and 5

Happy Saturday!

What a beautiful day here in Boston - hope the same for you.  This week flew by with visits from some of my dearest friends.  Kirsten her daughter Jane and I caught up Thursday before they caught a flight to Florida (lucky).  Yesterday my friend Ellen came by stocked with paper, scissors, glue and her amazing cleverness,  We made paper Easter Eggs to decorate my room - they look awesome...one egg for each of the Staudts, one for my nurse on duty that day, and one for Dr. Avigan my primary doctor and the head of the department.  Very fun but had me once again lamenting my lack of artistry skills - The grady white boat I drew on Jim's egg looks like a duck with a dunce cap.  Oh well - Ellen;s Eggs look awesome and we had a great time.

My lousy days may be  behind me - I am feeling quite a bit better today with only some back pain (attributed to the activity in the marrow which is in my hips) and sore throat (attributed to the chemo).  All in all not too bad.

A few more friends coming by this morning (Jack and Judy from North Andover).  Later this afternoon Jim, Emma, and my sister in law from DC Lorie will stop by to  visit, bring me fresh clothes and replenish my supply of spagettios - I cannot get enough of those!!

Speaking of Emma - she and several of her friends are in the news! Women in Science and Engineering offered a day long symposium focusing on careers opportunities in these fields.  The day at Salem State was a combination of hands on actives and lectures - sounds like the day was incredibly fun and the girls got a unique view into career options in these fields. http://northandover.wickedlocal.com/article/20150404/NEWS/150408645


Nothing going on this weekend in the way of procedures or new medicines - should be pretty quiet as we continue the waiting game for my counts to begin to rise.

Happy Easter everyone - thanks for checking in

Love Maureen

Thursday April 2

Woke up today feeling a bit crummy. Right now my counts are at their lowest and the "yuck"feeling is part of the process.  This is actually right on track for my nadir period (low counts)  This can last up to a week but I've  been here before and this too shall pass.  I am in great hands.

Thanks for checking in

Tuesday March 31

Looking out my hospital window I see a yellow orb, lots of clean pavement and very little snow on any of the green space.  Spring anyone??

Things continue to go well here at 778 Beth Israel.  I am a little tired but otherwise feeling quite strong.  This is kind of a wait and see period - the 'no news is good news' phase.  My blood counts have dropped (this is by design - my counts drop and then rise again as the new donor cells engraft) but, unlike the last two rounds of chemo, I've been spared any nasty side effects thus far.  The doctors are encouraged with how I am doing and that is all I need to hear!

Most likely my counts will soon be on the rise - maybe by next week.

Until then I am grateful for every good day, happy to be eating pretty well and to have decent energy.

Many thanks for your prayers, support, meals, love...all working exceptionally well!

Thanks for checking in
Maureen

Weekend Update March 28 and 29 - Day +3 and +4

Happy Saturday!

Hope everyone is off to a nice weekend.  The doc was in this morning and said I was the first patient he saw who was out of bed.  That reminds me how lousy folks on the 7th floor of Feldburg can feel at various times during their treatment - and how I have to seize every moment I feel good - to eat, watch law and order, update my blog, 'exercise' (I still feel a little silly pacing my room for exercise but I am hermetically sealed (not really - just unable to leave) my room until  my counts come up.

So I tried yesterday to give a picture of the progression of my treatment - when I speak with my medical team they preface most everything  with 'every patient is different'.  In general I think the progression will look like this

• Transplant done - things can go wrong here with fevers/hives - nothing went wrong with my transplant but I felt kind of yucky and uncomfortable the first couple days due to all the fluid
• Now until early next week (est.) - my blood counts continue to drop which is good and intended as my marrow is getting ready for engraphment of the new stem cells - new immune system and an even greater love of bratwurst
• Early next week plus 10 to 14 days (est) - my counts bottom out and this is when I can feel crummy.  I may have fatigue, stomach troubles (she says delicately) and fevers.  I will also be at the greatest risk for infection.  I will also likely be getting transfusions of red blood which will help with the fatigue.
• About 20 - 30 days from now (est)- my counts recover courtesy of the new stem cells producing red cells, white blood cells and platelets.  
• Discharge to apartments (?? when - maybe 30 days - hopefully less)- once my absolute neutrophil count (disease fighting white blood cells) reach a certain number and the doctors are confident I am fit to leave the hospital (I must be eating decently, moving about on my own, etc) I will  be discharged to apartments close to Beth Israel allowing for daily outpatient visits to the clinic.  The apartment stay can last 2 - 4 weeks.

Personally I am cautious about adding up all this time to get an estimate of when I can come home.  In general we think 2 months from my date of admission is a safe bet.  If complications arise with graft versus host disease it may take longer.  The medications I am taking can also do a number on my kidneys but they are watching this very closely - so far no issues.  

Kate and Emma are coming in today - It looks like a decent day so maybe they can get some Aunt - Niece Boston time as well.  Jim and Joseph will join them tomorrow and Kate flies home tomorrow night.

Loving that I feel strong right now - very very grateful.

Thanks for checking in

Love

Maureen

Friday March 27 Day +2

All went well with the stem cell transplant.  As part of the procedure they filled me with fluid - LOTS of fluids - so I've been a bit uncomfortable for the last couple days.  Beyond that, feeling strong and healthy.

So a quick recap - on Thursday March 19 I came back to Beth Israel for a week of conditioning prior to the transplant.   The conditioning regimen used two types of chemotherapy to destroy any remaining cancer cells (even though I have been in remission, the conditioning is protocol for any patient going through a bone marrow stem cell transplant).

On Wednesday March 25 I was given a stem cell transfusion from an unrelated donor (an angel from Germany who  donated her cells).  The healthy immune cells from the donor can recognize cancer cells and destroy them.  This is called graft vs. disease (or tumor).  

A possible problem after stem cell transplant is graft verses host disease (graft being the donor and host being me).  GVHD is a complication of transplantation where the donor graft cells attack and damage some of my tissues - this can cause skin rash, nausea, vomiting and may also damage my liver.

Paradoxically we want graft vs disease to get rid of any latent leukemia cells BUT we want to avoid graft versus host.  I am currently taking prophylactic medications and immunosuppressants to prevent GVHD.  The amount of the medications is a delicate balance and I have frequent blood draws to make sure I have the right dosage.  An art and a science I guess.

Over the next couple weeks my own platelets and disease fighting white blood cells (compromised because of the leukemia) will continue to drop until the new donor stem cells engraft and my new immune system kicks in.  We are probably looking at 4 weeks or so for this process to run it's course.

Kate is in this week and it is great to have the company.  She saw Jim, Joseph and Emma yesterday and was able to get to one of Emma's volleyball games.

That's it for now - thanks for checking in

Love Maureen

Wednesday March 25

As my brother John points out,my half birthday. Fitting. Had my breakfast and shower and am a bit looped up. The infusion  has begun ans should last for an hour or so.  The word I've heard most often is anticlimactic. So far that is true. May
Get fevers or hives but that is unlikely.  Will keep you poste

Tuesday March 24

Good morning. Wonderful visit yesterday with our good friend Paul who just returned from a wedding in a blizzard to  honeymoon in Hawaii. Not bad.

Today is a day of rest for me and tomorrow is the transfusion. I am told lots of sleepy medicines and liquids all afternoon on wed. I will probably have  the  chemo aftereffects (whatever those might) be within the next week or so. Following that, if all goes well, my new marrow will engraft and start producing blood  cells. Sounds simple but I am on a lot of medications to help this  all work.

Jim is in tomorrow and Kate comes in Thursday for a long weekend visit.

Not much else New. Thanks for checking in

Love Maureen

Here he comes...Mr North Andover

Last night  was a BIG night for the Staudts, our great friends the Collins and their daughter Megan and all of North America - well maybe just North Andover - Below is a photo of the 2015 Mr North Andover Joseph Staudt and his sponsor and best friend Megan Collins

Joseph and Megan had an absolute blast  preparing for and participating in  the Mr, North Andover contest.  The contest consisted of an introduction of each candidate, a beach scene for each candidate, (their  sponsor and their  ensemble), a group dance, the talent portion and finally a tribute read by the candidate (Joe) to his sponsor (Megan).  Joseph's talent was a montage that culminated in a tae kwon do exhibition (he  trained at Master  Shins in Andover).


Joe tells me it was not until after he read the tribute that he fully remembered this was a contest with a winner being announced - he and his friends simply had an absolute blast with the entire event.  There was not a dry eye after the tribute to Megan (his life long friend; side note: my friend and neighbor Karen and I gave birth to the dynamic duo within months  of each other and they have spent most everyday together since.  They've been talking about Mr. North Andover since at least 8th grade.).  Megan is a distinguished athlete (basketball and soccer) and the two of them push each other (literally most times) make eachother  laugh and, to  our delight, treat each others homes as their own.

Jim, Emma and Joe will come see me tomorrow - Emma has a girl scout sleepover tonight with an evening hike - god bless Anne Marie, Kimberly and Marie (our the troop leaders) as there  is still plenty of snow on the ground here.  Emma wrapped up basketball with a fun and winning season.  Though they made it pretty far in the playoffs this was not their year for a league win - a great, year nonetheless and many thanks to Coach Panos (the originator/manager of the sign up genius  meal plan in is spare time).  Emma has started volleyball and it seems to be a  bit more competitive this year in a new league.  So far so good - her team has really nice girls and their play has come together pretty early in the season.  Joe starts outdoor track with one of the first orders of business clearing the track field with snow blowers and shovels!

I am here at Beth Israel on Day - (that;s minus) 4 (started chemo on day - 6).  Wednesday is Day 0 (transplant  day).  So far so  good - I am far enough from the  last round of chemo that I seem to be past those side effects (not quite as tired, my appetite  has returned, stomach is consistently normal, and water tastes better - oddly water tasted AWFUL until a couple days ago),  The effects from this new round of chemo which started Thursday will probably kick in sometime next week,  It feels so good to feel good!!  Whatever comes with the chemo is all part of what I need to get through this.

I am on the same floor at Beth Israel and all my nurses are the same - I am right at home
A nice weekend on tap with my aunt and  cousin are coming by today.  Great few days and so very thankful for all the love and support.

Thanks for checking in

Maureen

PS There was also a nice article in our local news (you may need to copy and paste link into a browser vs link from the UR:.
http://www.eagletribune.com/news/merrimack_valley/here-he-is-mr-north-andover/article_0544853c-9ced-5905-9556-6611d848bb01.html